The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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A Baltimore Story: Remembering Will and Bruno

12/31/2019

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This is a sad story. Perhaps it is two sad stories—stories that begin with the loss of two boys. But it is also a hopeful story. It is a loving story. And, I share it as a reminder of why TCSF prioritizes bringing our SCN8A families together at our Annual Gathering: We are not here for our individual experiences alone, because we are a community that has decided to love, to share, to mourn, and to fight...together. 
-Hillary Savoie, PhD 
Founder and Director, The Cute Syndrome Foundation
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8 Things Every Parent Attending their First Gathering Needs to Know

12/22/2019

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When we heard about The Cute Syndrome Foundation's Annual Gathering, I thought, oh, that would be so neat, but there’s no way we could make that happen. Then we realized it was only 2 hours away, and my husband insisted we try to make it work if we could. I went in, not knowing what to expect. I felt unease and uncertainty, but, in hindsight, it was a great decision.

My time at the Gathering it left me wanting to create a guide for other SCN8A caregivers for when they attend their first Gathering. However, since my experience is unique, I thought I would reach out to my new-found friends, to inquire what other first-time Gathering parents experience. Here is what I learned:
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TCSF's Fifth Annual SCN8A Clinician, Researcher, and Family Gathering

12/19/2019

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Help us continue to support the SCN8A community through events like this Gathering. 

DONATE NOW
A week ago today the SCN8A community started arriving in Baltimore, Maryland in order to take part in the fifth annual Cute Syndrome Foundation SCN8A Clinician, Researcher, and Family Gathering. This event, which is held over two days every year in conjunction with the American Epilepsy Society meeting, began as a way to bring together all of the stakeholders within the SCN8A community, including the families. We hold this event because we believe in the power of SCN8A families to not only observing, but actively participating in driving the changes in medical science to help our children. This year, with 265 people registered for this event, it was, by far, our largest Gathering to date.
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The Cute Syndrome Foundation

PO Box 842 Ozark, MO 65721​
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
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Our tax identification number is: 46-2699066.

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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop